Autism Speaks ATN Registry Enrolls 4,000th Family

Four years ago, the Autism Speaks Autism Treatment Network (ATN) set out to collect information on the medical concerns of children and adolescents with autism across North America—while delivering the best in evidence-based, comprehensive healthcare and support for these patients and their families.

Through the efforts of hundreds of clinicians across what are now 17 sites, the ATN Registry has now surpassed 4,000 enrolled children. The information gathered from these participating families is providing the global healthcare community with priceless information on the medical conditions often associated with autism spectrum disorders (ASDs) and the best ways to manage them. In particular, such large numbers allow researchers and physicians to better understand and address the great diversity of medical, behavioral, and other quality of life issues associated with autism.

Enrolling our 4,000th family is an important milestone for Autism Speaks, as we continue to expand and support the ATN and its mission of providing the highest quality of comprehensive care by teams of medical professionals who understand ASDs and excel at conducting evidence-based research.

In 2008 and again this year, the ATN earned additional federal funding to operate as the Autism Intervention Research Network on Physical Health (AIR-P)—funding made possible thanks to the passage and recent renewal of the Combating Autism Act. Under the grant, awarded to the Massachusetts General Hospital for Children, the ATN/AIR-P Network continues to develop and conduct research aimed at directly improving the health and well being of children and adolescents with ASDs and other developmental disabilities. Funding is supporting research in areas of highest priority to families and that can have the greatest benefit for children.

As we celebrate the benchmark of the 4,000th enrolled child, we want to again express our deep gratitude for both the commitment of our participant families and the thousands of donors, volunteers, and staff members whose support make this work possible. Thank you for helping us improve the care and respect afforded to all individuals on the autism spectrum.

We are so thankful for the ATN Registry! That has been our prayer for many years, as there was no such thing back in 1966 when our little 4 year old son was diagnosed as autistic. We appreciate all your efforts for those parents who have heard that same news recently. It would have helped SO much to have a place to turn to for support and knowledge! You might visit my blog at autism45.wordpress.com to read journals, letters, testimony, and other articles that pertain to our experiences “way back then”…AND up to the present. Our son is now 49 years old, and is a fine, brave man, but still battles all that autism entails. God bless you! Carole Norman Scott, Tulsa, OK

Congratulations ATN! This is a significant milestone and one that wouldn’t be possible without the participating families and the network of clinicians who have made the network what it is today. Ten years ago, most people said “autism is untreatable”. Further, many practitioners didn’t put much credence in the medical co-morbidities such as sleep issues or GI abnormalities that occur in patients with autism. But those are the dark ages now…thanks to the ATN, under the leadership of Drs. Lajonchere, Jones, Perrin, Coury and many others, doctors recognize these issues as real and we are developing clinical guidelines that will help us treat these individuals so quality of life can be maximized. Many thanks to all who have made the significant achievement happen.

My autistic son is now neither a child, nor an adolescent. However, sometimes I add bits and pieces to encourage parents with autistic children. You see, my adult son was described by doctors as a ‘write-off’ when he was a child, yet despite the lack of knowledge about autism in the 1950’s and 1960’s, he eventually managed to become a happy adult and a university graduate. He could not speak until he was 9 or 10, so I like to think our experiences might be of help to other parents of children within the autism spectrum. My husband left unexpectedly before our son was born (and never supported us), so being a single parent with a handicapped child carried a huge stigma in those days, which took years to overcome. We survived and are happy. Thank you all.

First I think it’s great that 4000 children are now enrolled in the ATNs. I’m excited about the ATN’s. Our kids need a medical home.

I have a problem with the use of the phrase in the above article. “… the medical conditions often associated with autism spectrum disorders (ASDs) and the best ways to manage them.” What do you mean by “manage them?”

I do not want my childs autism simply “managed”. To me that is old school. Our kids autism is already being “managed” via ABA, OT, PT and other therapies. I want medical treatment of core symptoms that may contribute to behaviors such as inflammation and dysbiosis in GI and brain inflammation. Anti-inflammatories, enzynme therapy and probiotics.

Autism parents have waited patiently and watched millions of dollarrs being spent on research. As a parent, I expect the ATN’s to come up with effective medical treatments to alleviate core symptoms. Thank you.

I’m with you 99%, right down to your final statement “as a parent, I expect the ATN’s to come up with effective medical treatments to alleviate core symptoms. Thank you.” Half the time when I read your posts, I think I’m reading one of my posts and your little turquoise icon reminds me that we are different and, in fact, not the same person.

1% difference? I simply interpret the “manage” statement differently. It’s just semantics. I still think we may be the same Sarah :).

Type 1 diabetes is “managed” by monitoring diet, sugar, insulin, exercise, etc. Mitochondrial Diseases and Fatty Acid Oxidation Disorders are “managed” by monitoring diet, carnitine levels, fat intake, exercise, whatever. All sorts of medical conditions are “managed”. I believe the intent of Dr. Lajonchere in using the word “manage” is exactly as above.

Personally, I long gave up the word “cure” in relation to autism (or “recovered” for that matter) and now believe very much that we are “managing” his disordered system in order to “alleviate” his symptoms (causation is immaterial at this point). Once we framed what we were doing in different words, we became much, much happier and more relaxed. No longer were we striving to “cure” or “recover” him, but now we are “managing” his issues in order to “alleviate” his symptoms.

I use the word “manage” all the time and love that word in relation to our children.

We manage his diet, his carbohydrate intake, his calcium intake, his fat intake, his protein intake. We manage his probiotics, his enzymes, his supplements. We manage his sleep, his exercise (in relation to food/supplements). We manage his education and all his many activities (behavioral and otherwise).

We “manage” everything, every moment, including his medical condition(s).

Lori – check Katie’s reply below. Join a TACA or a NAA or whatever is close to you. Find a diet that works for your kid (just because a diet worked for my child – this isn’t always transferable). Exercise is hugely important for everyone. Just go to pubmed to see (even helps with brain growth and mood). Carbs – meet him with a complex carbs/protein/fruit whenever I pick him up. Our child needs to stay well fed at all times.

I’m not being specific deliberately, as I think this forum should remain a board about Autism Speaks. Go to the yahoo groups, they’re great.

Hi Sarah, Funny I get confused myself when I see two Sarah’s. You can call me “Sarah-blue” if that’s easier (a good friend I grew up was also named Sara. When we were kids, her father called her Sara True (her last name) and me Sarah Blue.

Thanks to research, I think the understanding of autism is evolving rapidly. Medical professionals are the beneficators of some tremendous research by GI doctors, neurologists, immunologists, toxicologists and geneticists. It’s been like a renaissance. I hope in the next five years we’ll see some breakthrough medical treatments that will make a huge difference in our childrens lives.

I look at autism as similar to diabetes. Autism is a condition my son will always live with but something that is also treatable so that he can function better. The word incurable use to be synomous with autism. For a parent, it was like a death sentence and I think that is not longer the case. I think the attitude is shifting for the better. Think of autism as a treatable medical condition- I love how that sounds.

How can our family be counted in the medical concerns for Autistic children/adults? I feel cheated that I was never given the option to participate. My 9 yr. old has severe dental issues due to his autism which, in turn, cause severe dietary problems. We are on a waiting list for a diet consult and for a suck, chew, taste, and smell evaluation at our local Children’s Hospital. It may be 2012 before he gets to see a specialist. He was sent for other evaluations at 18 months and diagnosed at age 2. Why were these evaluations not included? He could have been getting help for the past 7 years, but no one bothered to offer. Please let us help other children by including my son in a study. He is a poster child for ABA and early intervention. He”s been in Behavior Therapy for 7 years and he’s done a complete 180; ask anyone who has known him a while. However, his diet is something far from ideal. Why is this the last puzzle piece? It doesn’t make sense.

Remember: Halloween can be very scarey to ASD children. Noise & crowd overloads are 2 biggest sensory issues. If this is your first time out, try dressing them in their costume & let them go around house & ask you for treats, or the phrase Trick or Treat, so they get used to it. Secondly, go out early, while it’s still daylight and our little ones don’t have any balance issues with pathways, bushes, etc. Masks over their face may become a problem. Don’t stay out too late & possibly only go to houses where your child knows the person that lives there. When back home, go thru candy very carefully & only pick out a few things that your child really likes – they do not have to keep the entire bucket around, they may try eating it all at once, hide some in their room, feed it to the family dog, etc. Be careful & have fun!

I am very frustrated that ATN does not interact w families. We have to see meaningful life improving research, not just data collecting. I have invited ATN leaders to all and any biomedical fame conferences: NAA and ARI. They never attend and are unwilling to interact w these audiences. All ATN parent contributors were hand chosen by ATN doctors- ATN needs to hear more objective feedback.

Here in NYC ATN is invisible. Other than collect data I have no idea what they do. Meanwhile 10 NYC NAA moms hold monthly lectures, support groups, provide mentoring and expertise on IEPs and biomedical interventions. They have autism specialists from all over the country come to speak to parents. All services are free and no tax dollars are spent.